30 October 2012

Full Dose of Oral Chemo

Samuel's half term started last week Monday hence no update....apologies they've kept us really busy! On a brighter note, following Paige's ability to hold on to her neutrophils, her oral chemotherapy dosage was finally upped to 100% last week Monday.

With regard to her feeding tube, it was agreed by all (us and consultant Jo Walker) that we would monitor her very closely and if her weight dipped below or neared 10.6kgs we would have to consider reinserting the tube. Surprisingly I have very mixed feelings about all of this. Her feeding tube provides that much needed backup for when madame just isn't in the mood for eating. It was always very comforting at night knowing that she was able to get that extra 450 calories. It meant a bit of discomfort for her and an interrupted night's sleep for us, but it always seemed worth it in the end.

We had a pretty uneventful but fluid two weeks as plans changed on a daily basis. Tuesday we were planning to take the kids to Paulton's Park but both Paige and Samuel woke up with the sniffles. Of course with Samuel being at home Paige did not have any naps during the day and decided that she would spend the entire day on Saturday sleeping. She woke up or rather opened her eyes at 8.30am, downed tons of apple juice then went back to bed and woke up at 10.30am. Unfortunately she missed "The Elves and the Shoemaker - Boofy" a premiere at the Point Theater that was sponsored by the Rainbow Trust for their families. She was asleep again by 1.30pm and woke up at 5.30pm. Again missing an outdoor Halloween party.....I didn't mind too much cause it was bitterly cold on Saturday.

Finally things picked up on Sunday and Russell enjoyed a day of sailing (his early birthday present) and then we all went to Julie's house dressed in costumes for hotdogs and then onwards to the fireworks display. Paige absolutely loved both the social event and the fireworks. It's so reassuring to see her just mingling and running around with kids her age who are healthy :-) When we were outdoors looking at the fireworks I stupidly asked "Paige are you warm enough?" her response "I'm trying to watch the fireworks mummy...."

Today we spent a really lovely afternoon trekking through the woods from Bere Forest to 100 acre woods with mums and kids from my first time mum's group. We've now known each other for four years and the boys do get along quite well with each other, a welcome benefit !

Paige's neutrophils are still holding at 1.4 after a week of full dose of her Chemo, and she is scheduled for her Vincristine and Dexamethazone next week Monday. These 4 weeks sure do roll around quite quickly!

See you next week - look at the gorgeous hair !!!!

17 October 2012

Bloods are still good!

Tick - we made it through another week of Dex! Unfortunately the steroid Dex did not stimulate Paige's appetite and she actually ate less than normal. Additionally she clearly experienced jaw pain from the chemo vincristine that she had on Monday because she was tearing through quite a few lollies and complaining that her mouth was hurting. By the end of the week she was particularly grumpy and insomnia set in. On Thursday she woke up at midnight asking for milk and bread. She then wanted to read a story and play in her room, this continued until three am....yawn.  On Friday night she woke up again at 12.30 and didn't go back to sleep till nearly 4.00am. Fortunately she slept through on Sat but then the same issue on Sunday and Monday night. Dr Millard has advised that Dex can make her hyper so that we should give her the evening dose by 4.00pm and maybe she'll be less hyper at night.

Despite all of this, she did manage to get into trouble early in the week with my lipstick!

We enjoyed afternoon tea on Saturday, again at Standstead house, a special treat since Aunty Kathy, Paige's god mother and Russell's cousin came to visit for the weekend from London. The kids loved having Kathy here and it was great to have an extra pair of hands after Thursday and Friday night.

Here she is on the 'big slide' for the first time I think! She loved it, 'mummy that was fun! can we do it again?'

Bloods done yesterday were without incident and her neutrophils are holding steady at 2.1. So we headed off to ballet where she actually followed the teacher's instruction for the first time. My eyes welled up when it was her turn and she walked across the floor on her tip toes :-).
This was taken before class she wasn't too impressed with me because she was trying to watch TV.

In the end she smiled though

Finally her weight has dropped to 11.1kgs this morning so that we will monitor her over the next week and if there is no improvement in her weight the feeding tube may have to be inserted again:-(. She's been so happy without it and smiles so much more.

Again, we take life one day at a time and enjoy the good moments........

9 October 2012

Break from feeding tube

After a week of being off her feeding tube Paige has eaten very well all week and had maintained her weight! In fact she's even gained a tiny 0.1kg, a step in the right direction. With that good news in hand it has now been agreed that we will not insert a new one unless she needs it, we know it works and it can be inserted quite easily.....

This week at clinic she had Vincristine and reacted quite strangely when it was being administered, Wilf suggested that now that she is well her taste buds may have changed and she may be able to taste the chemo, apparently other kids say that it tastes like metal! She is also due her week of the dreaded dexamethazone this week! Good news on her blood results, neutrophils have shot up to 2.0, so that her dosage of oral chemo has been increased to 75%.

She continues to get into ALOT of mischief which revolves around opening taps and filling her toys with water or using the bathroom stool to get into my make-up. This time she chose a brand new deep red lipstick and was able to apply it in about 10 seconds or less!

as you can see she is quite proud of herself, incredibly difficult to discipline with a face like that :-).

She now has a better routine, she has ballet on Mondays and playgroup at Sam's school on Tuesday mornings, we've even arranged for our Rainbow support worker to spend some time with her and without me or Russell. We also managed to attend a family service at church on Sunday, a first for us as a family. So all things being equal we can continue to enjoy time our beautiful daughter and her current wellness, long may it last.

It's now been a week since I have handed in all my equipment to HSBC and said my goodbyes to my colleagues and my career. Even though I haven't been at work since Paige was born it was quite difficult to absorb that I am now unemployed and full time carer to Paige and mum to the kids :-) Some might even say that I was defined by my career, this will be the first time in 22 years that I am deliberately unemployed

Good night to all....

2 October 2012

Two year review - Passed!

Unfortunately Paige didn't have such a great weekend....she slept for 4 hours on Friday and Saturday. Then woke up on Sunday completely lethargic and spent most of the day sleeping ..... poor heart she must have been fighting something and fought it off or just feeling the effects of her increased dosage of oral chemo, which is causing her neutrophils to fall. On the bright side we have decided to give her a break from her feeding tube which was pushed out when she was sick, so it is quite lovely to see her face again :-), we just need to work on her smile now.

Her blood results this weeks shows a small decrease in her hemoglobin and neutrophils have fallen from 1.2 to 0.8. Apparently when teenagers have a fall they have complained that they can't get out of bed because they feel so crummy, so maybe the drop off for Paige made her tired? Maybe she'll tell us next time.

We've been quite busy with the house redecorating, the new kitchen just needs one final door to be complete and Paige no longer has a baby room, but rather a 'big girl' room ,which she seems quite pleased with, in fact she has said 'mummy I like my new room !"

Here she is making a cup of tea in bed and actually said 'mummy can you take my picture?'

She helped with the stickers, but refused to stay in the pic!

Samuel on he other hand is a bit upset that his room isn't as 'handsome' as Paige's. He's doing really well at school and has alreday received a gold sticker from the Head Teacher for his creativeness with a dinosaur and a 'Well Done' card for his model building. He now plays both Rugby and Football and loves both of them. He's also off to a birthday party this weekend for one of his classmates. I must say that WestHill is quite a social school!

Ballet continues to be a challenge for Paige, but she was much better this week, she also thoroughly enjoyed her playgroup at WestHill this morning, it's quite good to catch up with the other mums. Next week another round of Chemo and steriods are due, we'll also monitor her weight quite closely and a decision taken as to whether to reinsert her feeding tube will be taken next week.

Paige also has her two year review with our Health visitor Lorraine today and she passed with flying colours, she has met all her developmental milestones and Lorraine was quite impressed with Paige's speech and ability to understand and communicate, in fact when Paige was asked to build a tower with 8 wooden blocks Paige responded 'that's easy peasy' and proceeded to build the tower without any toppling over. Apparently many kids her age can't do that. So needless to say I was quite relieved to be reassured that she is doing so well despite her ups and downs this year :-)

Here's looking forward to an uneventful week.....